First, thank you to Dr. Miriam van Staveren whose story was told in the Nature article. She is a physician and a fellow “floxie.” Even as a physician, she had trouble getting her experience of being poisoned by Levofloxacin acknowledged:

“Since then, she has seen a variety of medical specialists. Some dismissed her symptoms as psychosomatic. Others suggested diagnoses of fibromyalgia or chronic fatigue syndrome. Van Staveren is in no doubt, however. She’s convinced that the antibiotic poisoned her.”

Second, the article mentions Fluoroquinolone Toxicity and Fluoroquinolone Associated Disability (FQAD) by name. This is huge! Rather than calling what we are experiencing something like, “a rare adverse reaction,” it is referred to as fluoroquinolone toxicity or FQAD. This is subtle acknowledgement that what we are going through is a syndrome–a thing in itself–not just a “side-effect” to be dismissed.

Third, even though the word “rare” is used throughout the article, and I know that this is annoying and off-putting for all of us who see that fluoroquinolone toxicity is NOT RARE, the article also notes that the frequency of fluoroquinolone toxicity is higher than many assume:

“From the 1980s to the end of 2015, the FDA received reports from more than 60,000 patients detailing hundreds of thousands of ‘serious adverse events’ associated with the 5 fluoroquinolones still on the market (most commonly tendon rupture, as well as neurological and psychiatric symptoms), including 6,575 reports of deaths. The FDA says that the reports of adverse events it receives — sent in by drug manufacturers, by doctors and directly by consumers — cannot be used to reach conclusions about the severity of problems associated with drugs. Still, the fluoroquinolones have attracted more complaints than other more widely used antibiotics. And only 1–10% of adverse events are estimated to be reported to the FDA, suggesting that fluoroquinolones might have harmed hundreds of thousands of people in the United States alone, says Charles Bennett, a haematologist at the University of South Carolina’s College of Pharmacy in Columbia. Bennett is also director of the Southern Network on Adverse Reactions, a state-funded pharmaceutical-safety watchdog, which has been working with people affected by fluoroquinolones since 2010.”

Fourth, mitochondrial damage is noted as a cause of fluoroquinolone toxicity:

“Accumulating evidence, Golomb says, suggests that fluoroquinolones are damaging mitochondria, the power packs inside human cells that evolved from symbiotic, bacteria-like cells billions of years ago. This kind of harm can affect every cell in the body, explaining why a wide range of symptoms can appear and get worse over time.”

Fifth, the article noted that Dr. Charles Bennett, may have found some genes shared by people who are hurt by fluoroquinolones:

“At a conference last September, Bennett reported preliminary data that might hint at why only some people develop serious side effects from fluoroquinolones. He took saliva samples from 24 people who reported neuropsychiatric side effects — such as memory loss, panic attacks and depression — and found that 13 of them (57%) shared a gene variant usually seen in only 9% of the population.”

If there are genes that make people more succeptible to disabling fluoroquinolone toxicity, perhaps those can be tested for before fluoroquinolone prescriptions are written.

Sixth, the article notes the obstacles that scientists, researchers, and doctors face when they question and investigate adverse drug reactions. It is noted that little support or funding for adverse drug reaction research is available, and that many scientists face push-back from pharmaceutical companies when they attempt to research fluoroquinolone toxicity.

Last, Floxie Hope was mentioned in the article. Squeee! What an honor and a privilege to be mentioned in an article in Nature!

“On websites and Facebook groups with names such as Floxie Hope and My Quin Story, thousands of people who have fallen ill after fluoroquinolone treatment gather to share experiences. Many of them describe a devastating and progressive condition, encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. They call it being ‘floxed’.”

Those seven points are the highlights of the article, in my opinion, but I suggest that each of you read the article yourself. It’s currently (03/25/18) on the home-page of nature.com. Squee!

This post was inspired by, “My Father’s Body, at Rest and in Motion: His systems were failing. The challenge was to understand what had sustained them for so long.” by Siddhartha Mukherjee, published in the January 8, 2018 issue of The New Yorker. (When not noted otherwise, all quotes are from “My Father’s Body, at Rest and in Motion.”) It’s a poignant personal account of Dr. Mukherjee’s father’s decline and death. It is also about the beautiful and delicate balance that is life. I cannot do the article justice in taking excerpts from it, and I suggest that you read it yourself. It is only related to fluoroquinolone toxicity peripherally (if at all), but I think there are lessons to be learned about fluoroquinolone toxicity within it. There are certainly lessons about life, and death, within it, and I recommend it to anyone who likes thoughtful, New-Yorker-esque articles.

I never thought about cellular homeostasis before I got floxed. Who, other than biochemists and med students, thinks about cellular homeostasis?

“There’s a glassy transparency to things around us that work, made visible only when the glass is cracked and fissured. Look, it’s nothing. To dwell inside a well-functioning machine is to be largely unaware of its functioning. That’s its gift, and we accept it thoughtlessly, ungratefully, unknowingly.”

Homeostasis, the ability to maintain internal consistency, is crucial for life. Indeed, “Homeostasis, the capacity to maintain a functional equilibrium, would turn out to be one of the cardinal principles of all organisms; it’s often described as one of the defining principles of life.” The dance within our cells that maintains homeostasis, that keeps us functioning properly, that keeps each feedback and feed-forward loop operating optimally, is necessary for health, and for maintaining life.

The answer seems to depend on multiple factors. How many physiological processes were disrupted? To what extent? Where? What feedback and feed-forward loops were triggered? What is the downstream damage? What are the genetic (and other) predispositions of the individual who has been hurt? What is the ROS/MMP burden on the body/cell at the time that a person takes ciprofloxacin or levofloxacin? What are the hormone levels at the time that a person takes the pill(s)? What are the compensating factors that make a person stronger or more resilient? What makes someone vulnerable? Who? What? How?

In theory, we can know the answers to these questions. In practice though, we can’t, and a certain amount of luck, or lack thereof, enters the equation. We cannot know the answers to those questions before we take any pharmaceutical, and thus, we are playing Russian Roulette with our bodies when we take drugs like fluoroquinolones that disrupt multiple systems, and cause disrupted cellular homeostasis.

“Indeed, once self-regulation fails, complex systems of all kinds can be claimed by a version of this process, sometimes called a failure cascade. A storm-battered tree takes down a transmission line; the increased load causes another network component to fail, further increasing the load, turning a local outage into a regional blackout. The failure of one division in one bank can trigger a global cataclysm. That’s a failure cascade.”

Perhaps the difference between a person who takes multiple fluoroquinolone prescriptions without notable effect and a person who experiences severe toxicity and even death, is whether or not the fluoroquinolones throw a person into a “failure cascade.” Homeostasis can be disturbed a bit with no notable effect (our healing and stability mechanisms kick in), but if it is disturbed enough to throw a person into a “failure cascade” everything goes wrong in his or her body, and it feels as if a bomb has exploded.

“Yet maintenance defies measurement; it’s the glass pane that’s visible only when it cracks. In the several months of my father’s decline, hospitalization, and death, we recorded the values of hundreds of things in his body: potassium, temperature, breathing rate, creatinine, bicarbonate, chloride, the oxygen saturation of his blood, the output of his urine. What we didn’t measure—couldn’t measure—was how hard his body was working to bestill these values, how much “unnatural vigilance” was required to keep things steady, and how deeply his physiology must have collapsed when the numbers finally dipped into abnormalcy. We had, in short, no real measure of homeostatic resilience, of physiological reserve.”

In “My Father’s Body, at Rest and in Motion” Dr. Mukherjee is writing about his elderly father, whose body is failing because of old-age and a bad fall. As difficult as it is for the elderly people (and their loved ones) who enter a “failure cascade” due to old-age and/or trauma, it is expected that old-age brings bodily failures, and that some of those failures will lead to other failures. We expect that time will disrupt homeostasis and that our cellular functions will eventually fail. But we don’t expect that a drug—a popular antibiotic no less—will trigger a “failure cascade.” They do though. Ciprofloxacin, levofloxacin, moxifloxacin, and other fluoroquinolones trigger multi-symptom, chronic, disabling illness—often in young people.

How do people who have been hurt by fluoroquinolones get back to a healthy state of cellular homeostasis? How do you stop the feedback loops that are leading to the “failure cascade?” I don’t know the answer for any individual, and nothing on this site should be interpreted as medical advice (I’m not a doctor), but some basic advice, that seems to have helped other people, can be found in the post, I’m Floxed, Now What?

It struck me as I read “My Father’s Body, at Rest and in Motion” just how little we (collectively–including doctors and scientists) know about health, or even life (not how to live life, but the actual process of life, and our cellular processes that are at the center of life). Health, healing, and even life, are things that are easy to take for granted, and to fail to study or even notice, until they go away or are threatened. I barely thought about my health, much less my cellular homeostasis, until it was threatened by ciprofloxacin. After I got “floxed” I had a reason to notice how delicate and precarious my health was. Health and its basis of homeostasis are both robust and delicate. Our feedback and feed-forward loops work as they should–until they don’t. Without homeostasis, without the processes that compose life working the way they should, life ceases. Fluoroquinolones disrupt homeostasis, and cause many physiological systems to go hay-wire. The damage that fluoroquinolones do can be severe–particularly if a “failure cascade” is triggered. With every fluoroquinolone pill taken, damage is done, and the risk of a “failure cascade” occurs. Nothing is worth risking a “failure cascade” if that cascade results in death, and very few “floxies” would say that treatment of their infection was worth the pain and disability caused by fluoroquinolones. We may not fully understand the delicate balance of life, or the processes occurring in our cells, but they are important none-the-less, and throwing a wrench in them with fluoroquinolones is both damaging and foolish.

The following is a guest post written by Sujata Patel. You can read about Sujata’s journey through fluoroquinolone toxicity in her Floxie Hope Story and on her web site, Journey with Sujata. If you would like to write a guest-post for Floxiehope.com, please let me know through THIS LINK.

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When it comes to feeling good and regaining your health, self-care is one of the most important things we can do for ourselves. I am sure you are thinking, “Yeah right…I barely have the energy to shower in the morning, let alone focus on self-care practices…” I get it. Please keep reading.

Prior to my fluoroquinolone poisoning in July of 2014, my self- care practices kept me fit, healthy, optimistic, peaceful, grounded and vibrant. There was nothing I couldn’t tackle, because my mindset and my physical health were well taken care of.

As a single mother with four teenagers at the time, it was very important that I kept myself in great health. I took that seriously. I did many things to keep myself in optimal health. I slept 8 hours a night. I took basic supplements. I ate very well (aside from the occasional doughnut or ice cream). I worked out five days a week. This included spinning classes, boot camps, yoga, walking, running, cycling and hiking. The endorphins that were released during those activities made me feel amazing. I also meditated 30 minutes twice a day. I meditated first thing in the morning, and in the afternoon before my children would come home from school. This kept me centered throughout the day and fully present for my children in the evenings. I spent a lot of time with friends. We would meet for coffee, hike trails in our local parks, ride bikes, or meet for dinner. We laughed and laughed at anything and everything that came up. My emotional and physical tanks were full. So when a friend in need called me, I could drop everything and be there to help in any way possible. Regardless of what stressors presented themselves…and they did…I was well equipped to handle them and the ups and downs that came along with them. And even if something threw me to the ground, I didn’t stay down very long. I could always connect with my self-care practices and lift my mood in a healthy way.

When I got floxed, everything changed. Almost every single thing that kept me grounded, centered, optimistic, fit, uplifted, and hopeful was taken away from me. I fell into the hole of a victim. My tendons were brittle, my muscles were in immense pain. The nerve pain that shot through my entire body was unbearable at times. My joints hurt so much along with the rest of my body, that it was even difficult to just sit or lie down. Anywhere there was pressure put onto my body sent impulses to my brain that registered as pain. And as many of you know, that pressure doesn’t have to be significant. It could be the soft touch of someone just resting his hand on your thigh in an attempt to reassure you.

Because of the completely debilitating condition, I could not walk to do things for myself, let alone spin, cycle, do yoga, hike, and run. Those endorphins that used to coarse through my veins? Gone. I couldn’t sleep at night because of the incessant pain. Anyone who has experienced chronic pain can understand what that does to someone’s psyche. The pain was so unbearable and my mobility so impaired, that I stopped reaching out to friends to get together. It was impossible to sit on a hard chair at a coffee shop without wanting to ball up and cry…let alone use precious energy to attempt to be there for a friend in need. The friends, the laughter, the social aspects of my life disappeared. Time in nature on trails at our local parks? Well that fell by the wayside also. It was too painful to even think about expending that sort of energy. The prospect of living like this at age 45 with 4 children that I was raising on my own was devastating. Of course major depression set in, and everything I had in my tool box to lift me out of it was inaccessible.

What now? Well I had to think about how I was going to help myself. Clearly, a part of me is always looking for a way to get better and heal. If I didn’t have that deep down badass drive, I would not be here sharing my success story with you.

In my hours of self-pity for no longer being able to do advanced yoga poses, I came across an article written by a monk who had suffered some physical limitations. He spoke about his daily yoga practice and how he adjusted to his situation. The main point that helped me was that even if he could not do asanas (poses), he could still connect to pranayama (breathing exercises) and meditation. Breathing exercises are a part of yoga, and when he woke up in the morning, if he couldn’t do poses he would connect with breathing. Day after day, his yoga practice consisted of only breathing and meditation. And he was gentle with himself, knowing that he was still practicing yoga…just not in the way most people view yoga. This article changed a few things in me. It helped me be gentle with myself and release expectations of doing things the way I used to. And not just in my yoga practice, but in my life. There were many things I had to relinquish. If I did it with resistance and self-pity, it was not helpful. But if I did it with compassion and gentleness for myself, I FELT better emotionally.

I started using breathing exercises and meditation to help relieve my pain. Of course, being in incessant pain, any reprieve from it was welcome. My meditation practice during this time was in no way one of those things where you see someone in full lotus position with proper hand positions and crown of the head reaching toward the sky. I was balled up in fetal position on the sofa or in my bed as I was practicing. What a beautiful gift it was to find that I could lessen the pain and even find brief moments of no pain while I was meditating. Finally – I was able to connect with a self-care practice that actually helped! Breathing and Meditation…

The next thing that came to my awareness was Epsom salt (magnesium sulfate) baths. Along with being extremely beneficial for drawing toxins out of the body, magnesium baths have so many more benefits (more about this in future blogs). I started taking Epsom salt baths a few times a week as part of my self-care practices. It was something I could totally do, cripple and all. All I had to do was fill up the tub, add some salts and sit there. While I was there, I would light candles, dim the lights, and use this time to connect with silence and softness. This was incredibly nourishing for my body as well as my mind and spirit. Very powerful.

I did start to find that I was so focused on researching solutions for this condition, that the other side of my brain was stagnating. I needed to do something to give my analytical brain a break. In an effort to do this, I started doing periodic creative nights. I am by no means an artist, but I would sit down with my girls and create whatever I could. It wasn’t about creating a masterpiece. It was about taking the time to DO it. Taking that paintbrush and dipping it in paint, then doing something…anything…with it on my canvas or paper. It is amazing how focused I could get on my creative project, that I could escape, for some moments, from the reality of my condition.

Massage therapy became a mainstay of my self-care practices, and still is to this day. Before being floxed, I might have had a massage once a year. It was usually on vacation as a well-deserved treat. I highly recommend this to anyone who has been floxed. But be careful. You don’t want anyone to press too hard on brittle tendons and have them rupture. Make sure you communicate clearly with your massage therapist and be selective about where you go! Massage therapy was great. It has helped me to release the trigger points, the constant contraction of the muscles and spasms. And all I had to do was get there, lie down, close my eyes, and breathe.

These few practices were a great start to being able to take care of myself in some way. These basic self-care practices took me from completely and utterly face down in the dirt to offering a little hope for relief, healing, and reclaiming my life.

What can you do, even in your condition, to help your body, mind and spirit?